Parents’ $10 million race against time to save their daughters

Disease doesn’t discriminate – it strikes the poor, rich, young and old, and leaves families paralysed with fear. Or, as in the case of the Gray family, it can mobilise the search for a cure – even if it means trying to raise $10 million.

Film producer Gordon Gray has many friends and colleagues in high places. So he’s enlisted their help to help find a cure for the rare disease that has managed to afflict both of his young daughters. It’s known as Batten disease, which can be fatal.

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In a fundraising video, being shared on Facebook by stars including Megan Fox, Mark Wahlberg and The Rock, Gordon explains, “I’m never going to give up hope or give up fighting. I have to believe that I’m going to save my girls”. The idea is that if the Facebook followers of the celebrities can donate just $1, the goal will be achievable.

His daughters, Charlotte, aged four and Gwenyth, aged two, have Infantile NCL Batten Disease CLN6 – a brain disease that leads to sight, mobility and cognitive function loss. According to The Charlotte + Gwenyth Gray Foundation, “as Batten disease is currently untreatable, those affected will eventually become bedridden, fully dependent on their families or caretaker, and face premature death. Depending on the variant, Batten patients’ life expectancies can range from as young as six to adulthood”.

Therefore, the race is on try and find treatments for the disease. The Grays found a doctor in New Zealand who is treating diseased sheep, and they’re hoping trials could soon extend to humans. But getting to those trials comes with a $10 million price tag.

More than half a million dollars has so far been pledged, with donations continuing to roll in daily.

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The Grays aren’t the only family to need a small fortune to save their children. Sydney grandparents, financier Barry and his wife Joy Lambert, recently made headlines after donating a staggering $33.7 million dollars to Sydney University scientists, to research the medicinal use of cannabis. Their granddaughter Katelyn has been given some relief from epileptic seizure by using cannabis-based medicine.

“When you get to the end of the road you try desperate measures,” Joy tells the Sydney Morning Herald. “I never imagined she would be able to go to preschool”.

(via Babble and The Sydney Morning Herald, image of Katelyn courtesy of The Daily Telegraph)

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